How do Australian mental health services use easy read to make information accessible for people with intellectual disability?

Introduction: Access to health information is a right for all people. Easy read information is one strategy used to make information accessible for people with intellectual disability. This research explored how easy read is used and the ways accessible information can address access barriers, with a focus on Australian mental health services. Methods: Semi-structured interviews were conducted across four sites to explore how easy read was used. Participants (n = 49) were easy read users, health practitioners and staff from services providing mental health care in New South Wales, Australia. An integrated health literacy framework was used to analyse data. Results: Most mental health staff did not use easy read or other accessible information, and did not consistently offer people with intellectual disability opportunities to understand, appraise and apply health information. This investigation confirmed the limited availability of accessible information resources, including easy read, and the importance of relationships of support when accessing health information. Conclusion: People with intellectual disability did not routinely have access to mental health information. Substantial change is required to address this disparity. Implications: Agency policy and processes require change to support staff practices that uphold the right to information. Inclusive practices that incorporate using easy read in health contexts, including mental health, are needed to facilitate change

Impact of post-release community mental health and disability support on reincarceration for prisoners with intellectual disability and serious mental illness in NSW, Australia

Background Prisoners with an intellectual disability are overrepresented in custody and more likely to reoffend and be reincarcerated compared with the general prison population. Although prisoners with intellectual disability have many of the same risk factors for recidivism as the general prison population, the high rates of mental illness experienced by this group are key drivers of recidivism. Aims We aimed to assess the impact of provision of post-release disability and community mental health support on rates of reincarceration in a cohort with identified intellectual disability and serious mental illness diagnosis. Method We conducted a historical cohort study using linked administrative data-sets, including data on hospital admissions, community mental health, disability support and corrections custody in New South Wales, Australia (n = 484). To assess the time to return to adult custody, we used survival analysis on multiple failure-time data. Results Over the median follow-up period of 7.4 years, 73.7% (357) received community mental health support, 19.8% (96) received disability support and 18.6% (85) received a combination of supports during a post-release period from prison. Lower hazards of reincarceration in a post-release period were associated with receipt of community mental health support (hazard ratio [HR] = 0.58, CI 0.49-0.69, P < 0.001), or a combination of community mental health and disability support (HR = 0.46, CI 0.34-0.61, P < 0.001). Conclusions High rates of reincarceration for prisoners with intellectual disability and history of serious mental illness may be modifiable by provision of appropriate mental health and disability supports

Factors associated with acute care service use after epilepsy hospitalisation in people with intellectual disability

Background: This study aimed to identify factors associated with unplanned acute hospital readmission and emergency department (ED) presentation after hospitalisation for epilepsy in people with intellectual disability (ID). Methods: This study is a retrospective cohort study using linked administrative datasets. We identified 3293 people with ID aged 5–64 years with a hospitalisation for epilepsy between 2005 and 2014 in New South Wales, Australia. We examined unplanned readmission and ED presentation within 30 or 365 days and associations with demographic, socio-economic and health status variables. Modified Poisson regression with robust estimation was used to model outcomes within 30 days. Negative binomial regression was used to account for the overdispersion of the data and to model 365-day outcome rates. Results: Around half of the cohort had an unplanned readmission and ED presentation within 365 days of the index hospitalisation. In fully adjusted models, being female, being a young adult and having a longer or acute care index admission, mental and physical comorbidities and a history of incarceration were associated with an elevated risk of readmission or ED presentation. The strongest association was observed between history of self-harm and 365-day readmission (incidence rate ratio 2.15, 95% confidence interval 1.41–3.29). Conclusions: Socio-demographic, justice and health factors are associated with unplanned readmission and ED presentation risk after hospitalisation for epilepsy in people with ID. Interventions targeting improving continuity of care should be tailored for individuals and their support workers. The findings also emphasise the importance of person-centred multidisciplinary care across different health sectors

Barriers to healthcare for Australian autistic adults

Barriers to healthcare experienced by Australian autistic adults have not been previously explored. We conducted a cross-sectional investigation of barriers to healthcare and associated factors from a subtle realism perspective. Perceived barriers to healthcare were obtained from the Barriers to Healthcare Checklist Short-Form (BHC). A total of 263 autistic and 70 non-autistic individuals completed the BHC. On average, autistic adults reported more barriers to healthcare (4.58) than non-autistic adults (0.76). Gender diversity, higher levels of generalised anxiety, greater global disability and less satisfaction with social support contributed to the experience of barriers to healthcare in autistic participants in regression modelling. Australian autistic adults face substantial barriers to healthcare. Understanding these barriers provides an opportunity to develop approaches to improve access; such as co-designing a healthcare access roadmap for autistic adults, with co-designed policies and practices which advocate for the needs of autistic adults. Lay abstract: This study looked at how Australian autistic and non-autistic adults experience barriers to healthcare. We asked autistic and non-autistic adults to complete the Barriers to Healthcare Checklist Short-Form (BHC). We analysed data from 263 autistic adults and 70 non-autistic adults. We found that autistic adults experienced more barriers to healthcare than non-autistic adults. Gender diversity, feeling more anxious, having greater disability and feeling unsatisfied with social support contributed to barriers to healthcare in autistic participants. We recommend interventions such as developing and implementing a national action plan, similar to the National Roadmap for Improving the Health of People with Intellectual Disability (2021) to reduce barriers and address unmet healthcare needs of Australian autistic adults. We also recommend working with autistic adults to develop new policies and strategies, implementing environmental adaptations to health care facilities, and increasing Autism education opportunities for health professionals to address gaps in knowledge

A scoping review of registered nurses' delegating care and support to unlicenced care and support workers

Aim: To scope the international literature about registered nurses delegated models of care to unlicenced workers, identify gaps and reflect upon how the evidence relates to nursing in multiple contexts. Design: Scoping review of the peer reviewed literature from the year 2000 onwards, using the PRISMA-ScR checklist. Methods: The study searched the following databases in February 2022: CINAHL, Medline, ProQuest, and SCOPUS, and included keywords, Boolean operators and subject headings relevant to registered nurses delegating the provision of care to unlicenced workers. Results: A total of 49 articles met the eligibility criteria for this study, and relevant data were extractedThree models of delegation were highlighted within the literature: direct, indirect and a mixture of both. The data highlighted that direct delegation mainly occurred in acute contexts, with delegation decreasing with increasing patient acuity and/or complexity but the threshold of when this would occur was not clear. There was one intervention study that measured patient outcomes which could aid in the determination of what is effective delegation. For studies that did report on it (n = 6), there were few examples of better patient outcomes in cases where care was delegated from registered nurses to unlicenced workers. Conclusions: The scoping review highlighted heterogeneity in practice areas and methods of delegation practice. A key gap in literature is the absence of studies focusing on patient outcomes, with a clear baseline to measure and identify effective delegation practices. Additionally, the legal and logistical implications presented in both direct and indirect delegation practices is not evident in the literature. Implications for the Profession: Decisions related to delegation are often made at the service level and prescribed to those who work within the service, suggesting that models of indirect delegation are in fact not delegation at all, rather a re-distribution of nurses' work. Relevance to clinical practice: Delegation is a vital component of the scope of practice of registered nurses. This review has highlighted unique differences in delegation by practice context, where the proliferation of unlicensed workers in certain contexts places a vastly different professional and legal burden on the registered nurse

A scoping review to inform an auditing framework evaluating healthcare environments for inclusion of people with intellectual disability and/or autism

People with intellectual disability and/or autism are likely to be in hospital more often, for longer, and have poorer health outcomes. Few audit tools exist to identify their barriers in mainstream healthcare environments. This study aimed to identify evidence of audit characteristics of healthcare contexts specifically for people with intellectual disability and/or autism, for conceptual development of an auditing framework. A scoping review of evaluations of healthcare environments was completed in January 2023. Findings were presented using the PAGER framework. Of the sixteen studies identified, most originated in the UK, nine focused on intellectual disability, four on autism, and three were concerned with mixed diagnosis. Six domains for auditing healthcare environments were identified: care imperatives, communication to individuals, understanding communication from individuals, providing supportive environments of care, supporting positive behaviour, and actions to make things go well. Further research is recommended to refine an audit framework

The contribution of cumulative blood pressure load to dementia, cognitive function and mortality in older adults

Background:Few studies evaluated the contribution of long-term elevated blood pressure (BP) towards dementia and deaths. We examined the association between cumulative BP (cBP) load and dementia, cognitive decline, all-cause and cardiovascular deaths in older Australians. We also explored whether seated versus standing BP were associated with these outcomes.Methods:The Sydney Memory and Aging Study included 1037 community-dwelling individuals aged 70-90 years, recruited from Sydney, Australia. Baseline data was collected in 2005-2007 and the cohort was followed for seven waves until 2021. cSBP load was calculated as the area under the curve (AUC) for SBP ≥140 mmHg divided by the AUC for all SBP values. Cumulative diastolic BP (cDBP) and pulse pressure (cPP) load were calculated using thresholds of 90 mmHg and 60 mmHg. Cox and mixed linear models were used to assess associations.Results:Of 527 participants with both seated and standing BP data (47.7% men, median age 77), 152 (28.8%) developed dementia over a mean follow-up of 10.5 years. Higher cPP load was associated with a higher risk of all-cause deaths, and cSBP load was associated with a higher risk of cardiovascular deaths in multivariate models (P for trend < 0.05). Associations between cPP load, dementia and cognitive decline lost statistical significance after adjustment for age. Differences between sitting and standing BP load were not associated with the outcomes.Conclusion:Long-term cPP load was associated with a higher risk of all-cause deaths and cSBP load associated with a higher risk of cardiovascular deaths in older Australians

Prevalence of intellectual disability in New South Wales, Australia: a multi-year cross-sectional dataset by Local Government Area (LGA)

© 2020 The Author(s) The presented dataset relates to a research project titled “My Home My Community” undertaken at University of Technology Sydney (UTS) which has been funded by the National Disability Insurance Agency (NDIA) Australia. The dataset reports estimated prevalence rates of Intellectual Disability in NSW by local government area (LGA) from 2010 – 2015. The dataset is a re-examination of a cohort of 92, 542 people with intellectual disability from a larger linked research dataset built by the Department of Developmental Disability Neuropsychiatry, School of Psychiatry, UNSW. The dataset in this paper is presented in a multi-year cross-sectional format. The cohort of people with Intellectual Disability was analysed to estimate, quantify and visualise where people with intellectual disability live in New South Wales (NSW). The cohort analysed in this dataset had been generated in an earlier project undertaken by the UNSW-based authors. This dataset was generated to share with local governments in Australia and has the potential to be more widely used in a range of health policy and planning research, and city and regional planning research environments. It represents one of the only datasets currently available in Australia on Intellectual Disability describing prevalence rates at a local government area level. This dataset allows for population comparisons in other Australian states and internationally and can be examined in combination with other social and economic datasets to continue to build evidence about disability, planning and geography

Epidemiology of gastrostomy insertion for children and adolescents with intellectual disability

The largest group of recipients of pediatric gastrostomy have neurological impairment with intellectual disability (ID). This study investigated trends in first gastrostomy insertion according to markers of disadvantage and ID etiology. Linked administrative and health data collected over a 32-year study period (1983–2014) for children with ID born between 1983 and 2009 in Western Australia were examined. The annual incidence rate change over calendar year was calculated for all children and according to socioeconomic status, geographical remoteness, and Aboriginality. The most likely causes of ID were identified using available diagnosis codes in the linked data set. Of 11,729 children with ID, 325 (2.8%) received a first gastrostomy within the study period. The incidence rate was highest in the 0–2 age group and there was an increasing incidence trend with calendar time for each age group under 6 years of age. This rate change was greatest in children from the lowest socioeconomic status quintile, who lived in regional/remote areas or who were Aboriginal. The two largest identified groups of ID were genetically caused syndromes (15.1%) and neonatal encephalopathy (14.8%). Conclusion: Gastrostomy is increasingly used in multiple neurological conditions associated with ID, with no apparent accessibility barriers in terms of socioeconomic status, remoteness, or Aboriginality.What is Known:• The use of gastrostomy insertion in pediatrics is increasing and the most common recipients during childhood have neurological impairment, most of whom also have intellectual disability (ID).What is New:• Nearly 3% of children with ID had gastrostomy insertion performed, with the highest incidence in children under 3 years of age.• Gastrostomy use across different social groups was equitable in the Australian setting

Experiences of Performing Daily Activities in Middle-Aged and Older Autistic Adults: A Qualitative Study

This is the first study to investigate instrumental activities of daily living in older autistic adults. We conducted interviews with fifteen adults (mean age = 60.1, SD = 7.4, range = 50–73) from Australia with no intellectual disability. Analysis included both deductive and inductive steps, to categorise responses using the Occupational Performance Model Australia and identify themes across participants’ experiences. Strengths and challenges were unique to the individual, as were the methods they had developed to manage tasks. Challenges occurred mostly at the interaction between aspects of the environment (sensory, cognitive, social and cultural) and personal factors such as health conditions and sensory sensitivities. Enhanced person-environment fit is needed, as is a shift in wider sociocultural attitudes to enable comfort and autonomy in later life